Fundraising Effort! I'd love your support...

One day this summer along with some of the YogaBellies family, Andy and Hannah from Insight Photography/Tummy to Toddlers took some pics.  This has now turned into a Charity Fundraising Calendar for two charities very close to my heart, Tommy's (YogaBellies Charity of the Year) and Yorkshire Cancer Research.

I had the idea to do a fun and cheerful calendar earlier in the year, and then when the shit hit the fan it got waylaid a little, but I've finally got there, with lots of help from my friends.

This is just a taster of the pics, we were on Mappleton beach (which was new to lots of the mummies and I know lots of them have visited it since), the weather did us proud, with lots of sunscreen needed on the day!  The families all had a fun time, with some of the little ones paddling, digging in the sand and a couple of babies were reported to eat the sand - I'm sure it went straight through them too!

I wanted it out before now, but I've struggled a little bit recently with energy levels so I've not got long to get them shifted, so would appreciate any help spreading the word. And of course, buying one!

To buy this you just need to press on the link here to PayPal Me!  (Very Easy, just fill in the amount and tell me where to send it!) The full colour A4 Calendar is £6 for the calendar or £7.50 with postage (UK only) Collection is available from me (Hull) in classes or from my lovely hubby Allan at MKM Beverley.

The charities are both very close to my heart, maybe the Yorkshire Cancer Research is obvious, I'm a Yorkshire Lass and I've had cancer... Each week in Yorkshire 565 people are diagnosed and the rate of cancer is the third highest in the UK!  And two people in my circle of friends in the last few weeks!! Tommy's is the YogaBellies Charity of the Year which is one reason they are to benefit of this fund raising effort, another reason though is that Tommy's exists to save babies lives and fund research into miscarriage and pregnancy complications. Very sadly we've had a miscarriage in our family this year and my son and daugher in law are still recovering from this.

Lots of you said 'If there is anything I can do please let me know'... So please support me in this effort.  Press the button!!

Thank you xxx

Shoot me now!

I feel I have a lot to say about the language used around cancer, but I'm having difficulty articulating what it is I want to say but for now, what I can say is the violence metaphor is very prevalent!  We battle with cancer (and sometimes lose that battle), we have a war on cancer, we fight the disease and I hate fighting, but it is one of the metaphors that is constantly used, even though research has shown that people with cancer can find it disempowering.  Hell, even searching for an image for this post put me in a hot sweat!  The pictures that come up are so scary!!
So why am I talking about Shooting?  Well, I had this lung biopsy...

There I was, flat on my back on a narrow hospital bed, with 7 members of staff around me, all fully introduced as is the protocol, with my nurse for the day at my head talking to me, and the large polo-shaped scan machine placed so the Doctor could see inside me to take a lung biopsy.  I had to keep my breathing regular, and not too deep as he didn't want my lungs too mobile (believe me I was breathing deeply to try to keep my anxiety levels down), and he would take the biopsy just to the right of my breast bone.

As an aside, when I went in I was asked if I was allergic to medical tape as they might need to tape my breast out of the way... Hello, I'm 50, laying on my back, my boob is in my armpit, surely that's enough out of the way?  It wasn't mentioned again ;)

Back to the biopsy, nurse chatting at my head, talking about so many different topics, (she honestly never shut up, I think she was well suited for the job)  I have a local anesthetic in my chest  and I'm all set up.

Nurse: 'The Doctor is going to do the biopsy now, he's prepared the gun, he's placing it on your chest'

Me:  Nods in acknowledgement, I can feel it there.

Nurse: 'He's going to shoot you now'

Me: Nods in acknowledgement - Bang of the gun into my chest, I feel it!

Nurse: ' He's going to shoot you again now'

Me (Internally Shouting) For Fluff's sake use some different language!!!

As if being flat on your back on a hospital bed, in an open hospital gown, surrounded by fully clothed people, knowing this procedure may give you a diagnosis of cancer, doesn't make you feel vulnerable enough ... they they get a gun and shoot you!  Now I'm not sure what other language could be used here.   It was what happened - he got a piece of equipment and shot it into my lungs and withdrew two tiny pieces of tissue (I know how tiny they were, I asked to see them before they went off to the lab for testing).  At least it wasn't a bullet.

It was all so common place for them, the placing of the gun on my chest and the shooting. Me, who doesn't like violence and shooting - but that day - I felt like I wanted Clint Eastwood (circa The Good, The Bad and the Ugly days, or Dirty Harry days - Do You Feel Lucky Punk?) to come out from behind the scanner and shoot the Doctor and the chatty nurse for me, it was so surreal for me I honestly wouldn't have been surprised if it had happened!

Living with SAD

(This is an edited repost of a previous blog, but I've been asked a few times recently about my mental health and with it being World Mental Health day on 10/10 thought it worth a repost)

Sitting here with the sun streaming through my bay window it is odd to think that I’m writing a piece on living with SAD, but for me, thinking about SAD now, when the sun is out and before the clocks go back it is a good time to do so.  Maybe if you struggle with winter now is the perfect time to put some of these into place if you haven’t tried them before.

What is SAD? Seasonal Affective Disorder- SAD is a form of depression brought on by shortened daylight hours and lack of sunlight, said to be experienced by approximately 2% of the UK population.  For about 20% of the UK population, Sub-syndromal SAD is mildly debilitating symptoms of SAD that cause discomfort but not serious suffering. (SADA http://www.sada.org.uk)

Why am I writing about SAD, what qualifies me to do this?  Well I’ve been living with it for as long as I can remember and I have more or less worked out for me how to manage it so that it is not totally overwhelming/debilitating.  Below are a few thoughts on what I do, I don’t know it all by any means, but I do know what works for me, and on some I still have work to do.  Some may be new to you and some you may have already tried.  If you’ve tried them previously and found them not to work it may be time to revisit them? For example I tried previously with the eating and then decided it didn’t make that much of a difference, now I know it to make a vital difference but it took a while and a few attempts to acknowledge this.

So in no particular order:

Lights -  I use a Lumie desk lamp both on my dressing table and when I eat breakfast, I also use it during the mid-winter period anytime that I am sitting working on my computer.  These lights are not cheap, but they are worth their weight in gold as far as I am concerned!  And Lumie also do a free trial before you buy so it is worth investigating.  The higher the lux the stronger the light and the less time you need to sit in front of it.  Mine is 10,000 lux.  I also have a body clock which wakes me more naturally as the light gently brightens, if you don’t wake then there is a beep feature too.  I am usually awake before this point and switch it off before that rude beep! www.lumie.com

Daylight – Spend some time outdoors every day.  I am now very fortunate that as I am self-employed I run my own schedule to allow me time outside each day, but even when I was employed I made sure I took a walk outside at lunchtime.  Even on the dullest days it makes a difference.  Now I walk the dog around lunchtime (the brightest part of even the dullest day) particularly in mid-winter when the days are so short.  It is not Christmas (more on this later) that I await in December it is the Solstice, the 21st, so I know that I have passed the shortest day and the days start to get a little longer from then.

Yoga – Always yoga!  My yoga is vital to me, without it I become stiff, sullen and snappy! & even more so in winter.  Why do I think this is vital? Because I know that when I am down/depressed/SAD/whatever I have previously dropped yoga from my schedule because I haven’t got time or I can’t be bothered or I don’t feel like it.  This is the very time I need it most.  For me I have learned what I now need from yoga at any particular time, but this has taken years.  At first I just knew that anything I actually did made me feel better, so it was just a case of forcing/encouraging myself to get the mat out or turn up at a class, and I would feel better afterwards.  And if I didn’t, and there were many times I didn’t, I felt worse.  Now it might be some restorative yoga I need, or a good flowing sequence or some more breathing and meditation but anything is always better than nothing!

With breathing for me I know that Nadi Shodhana or alternative nostril breathing is so important.  This is what it says, a focus on breathing through alternative nostrils.  It really helps with that balance, not too much stimulation but equally not too much relaxation. When I am down/depressed/SAD/whatever my preference is often for static asana (posture), especially Savasana (corpse pose) and yoga nidra but I know that too much at that point can be counter-productive, so the alternate nostril breathing gives me that amazing and much needed balance.

Maybe yoga is not your thing? But move somehow, anyhow! Motion shifts emotion, so walk, swim, bike, skip, run, climb whatever it is that floats your boat!

Eating well -  When I am down/depressed/SAD/whatever I would quite happily live on white bread and butter, cake, ready salted crisps and cups of tea.  This is not a good diet!  (I know this now, I didn’t always believe this). But it is what I crave in winter. Sometimes I still eat these but know with absolute certainty that I will feel worse if I carry on with them.  I do still allow myself indulgences of them occasionally but have to encourage myself to eat protein and lots of veggies.  I love a hugely colourful plateful so challenge myself to get six or more colours on a plate when eating.  I am, however, still working on this!

Alone time – I am an introvert, a gregarious introvert but an introvert nonetheless. I need time alone to recoup my energy.  I also know that I need a balance in each day and each week of time alone and time spent in company (in relation to both work and leisure time). And I can get the balance wrong – too much alone time can be as counterproductive as too much company!

Winter holiday – we now take our holiday in winter, sometimes February, but more recently December/January.  This works well for me, it gives me that boost of sunshine and rest that I need in order to get through the rest of winter, for you it maybe that you need it a little later in the season. We go somewhere warm (with more or less guaranteed sunshine and longer day length) for at least a week.  In an ideal world I’d live where it was summer all year round!  This is unlikely to happen in this lifetime :) but I’m working towards it…

Not too much festivity – Winter celebrations – aka Christmas! OK I'll admit it - I don’t really like Christmas, it is not something that I have come to admit lightly.  I have been openly and quite strongly criticised for not liking Christmas!! Though I know I am not the only person to find it trying.  I find it hard work because of when it is, as well as the jollity of it all, and the shopping (I hate shopping!).  All I want to do is hide under the duvet and ‘people’ expect me to want to go out and socialise, repeatedly, with other people that I may barely know just because we have a little bit of a connection.  I am now choosy in what I do in relation to these celebrations. I say yes to some things but no to others.  I know that I cannot do repeated late nights (more of which later) and I know that I cannot do repeated big gatherings (see above).  Some people (I’m told)  may feel I’m selfish in this but I know what I need to do to keep me healthy;  I have previously tried to do far more than I knew was healthy in an attempt to please others.  Knowing myself so much better now helps me to say No.  It doesn’t mean that I don’t like you or want your company; it just means that I can’t do it all and I can’t do it then.  Invite me in the spring for a lunch rather than a Christmas night out and I’ll be there like a shot

Sleep – I need 8 hours, I can just about manage on 7, less than 7 and things start falling apart rapidly.  Repeated nights of less than 7 hours have me a gibbering wreck within a week! (Sorry mummies - I know some of you are hating me just now!)  But much more than 8 and I become comatose and want to stay in bed, so once again it is that balance.  And my yoga certainly helps me sleep much more soundly than I ever used to do.  More yoga = better sleep = happier Pam!

Reading – I love reading but I lose the capacity to read when I am depressed.  This for me is one of my earliest indicators that something is not good for me.  I love a good novel but when I find that I have read the page/paragraph three times and still don’t know what is happening then I know it is time to take a good look at myself and see what I need to do to rectify this for me.  I know to watch for it now.

This too will pass – My four favourite words, they help with so many situations!  I had heard them before but they became real for me during my yoga training in Mexico.  With SAD knowing that winter will end, that spring will spring again and that the sun will shine is so valuable.  We will not be in the depths of winter for ever, and knowing I will feel better, knowing I will have more energy again, knowing I will want to go out and share times with friends again helps even if at the time I don’t have those things.  Even though this is in relation to SAD those four little words help me in the rest of my ‘regular’ life on so many other occasions too, knowing that I will not always feel like this, this too will pass, makes 'it' (whatever the it is that I'm dealing with at the time) far more manageable to deal with at the time, but that has been a long lesson to learn.  Believe me that it has very much been my mantra over the last few months!

Do what you love – I was previously in a job that didn’t fit with my beliefs and values, I was unhappy. Being unhappy does not make you depressed, but it certainly didn’t help the state of my mental health.  Walking away from a job is not an easy thing to do. In my case I was fortunate as a severance package made it an easier choice.  I now do what I love – teaching yoga and workshops – and it certainly contributes to me being healthier and happier, though I still have work to do on that work/life balance!

Smile/laugh – This section may sound contradictory…  Put on a smile or laugh, even when you don’t feel like it.  The brain does not know the difference between the real and the fake and by using these muscles (facial & belly) it sends signals to the brain that you are happy.  When depressed it is probably the last thing you feel like doing but it works.  Laughter Yoga works for me so well, I can fake laugh and instantly have a mood lift, I can put on a huge smile even when I feel like crying and it does make a difference, sometimes a little difference sometimes a bigger difference. And that fake/false smile/laugh can and does turn real.

But, and it is a big BUT, don’t just put on that false/fake smile and pretend to the world that everything is alright.  It is about what is going on for you that is important.  When someone asks ‘How are you?’ we may reply ‘yes I’m fine’, and that is often appropriate, but when someone close asks how you are, if you are not fine then don’t say you are!  Tell them you need a hug, tell them you are struggling and could do with some help, tell them you need some time out, to just to ‘be’ for a while. I am trying to say not to hide yourself behind that fake smile, particularly when you need support, but that it is still important to do it for you to lift your mood. Said it might appear contradictory!

Be happy – Ok, glib comment here maybe!  But not really, focussing on happiness really has made a difference to me.  The Happiness Project by Gretchen Rubin is just one of a long line of self-help books that I have read and done and that has helped me understand me.  This one made such an impact that with a friend (thanks Lynne) we set up The HEY Happiness Group to keep a focus on happiness.  (This group has been running for over 2 years now and is something I'm very proud of).

When you are in the depths of depression someone from outside telling you to be happy is absolutely the last thing you want, I know I’ve been there, but from inside, when you work out what makes you happy and do that thing/those things regularly as part of your routine it really does make a difference. (But it does have to be what makes you happy, not what you think will make you happy because it makes others happy!)

Ask for help – Get the troops to rally round!  This is not being lazy or not coping (both things I have previously told myself); this is a good tool in your toolkit of coping mechanisms. Ask for help, whether it is little or bigger things.  I have a fabulous family and support network but I still sometime struggle to ask for help when I need it (though I am getting much better at this now)  This could be just telling someone about your SAD and asking them to mention to you if they notice that things are not quite usual, particularly in those winter months.  This could be at home or at work.  But ask them to do it gently and with love.  If you are anything like me you may take their genuine concern for your welfare and offers of support as criticism and go into defensive mode!

Talk – or perhaps write? Tell people about it, just what I’m doing here. I didn’t always discuss the fact that I struggle/am blessed with depression.  Now I am much more open about it and I find it easier to deal with when it comes.  I am as open as I can be about the fact that I have had depression.  I also find it easier to discuss once it has passed, not while I am in the middle/muddle of it! Seriously, talk to me then and I may well deny it, alternatively I may just dissolve in a puddle!

My depression is usually seasonal but not always.  I put struggle/am blessed with in the previous paragraph because that is how I feel about how depression affects me.  ‘Struggle’ because it is often a struggle; but ‘am blessed with’ because I truly believe it has made me the person I am today and that is a much more empathetic and considerate one than I used to be.

Not taking on too much – I am very guilty of thinking I can do everything and getting it done by tomorrow at the very latest!  I am enthusiastic about new projects and love to learn.  This means I say yes to things, get fired up and want to do whatever it is and learn everything about it! Then I have no energy left to deal with everything, including the new thing. And then I have to back off and say no, and sometimes let people down (which I hate doing!)  So I now try and curb my enthusiasm so that I get the balance right (that word again – I am Libra!) of being involved and doing things but not taking on too much.  Again, I am still working on this one!

Drugs – prescription ones, obviously!  I have used anti-depressants in the past.  I no longer use them as I don’t feel I need them, I now control my SAD with all the other tools I’ve mentioned above.  But I have used them and found they worked for me.  Some are better than others and some have more side-effects than others.  I found the ones that worked for me and if I had a bad winter/period and couldn’t control my depression with other methods I would certainly go back to my GP and ask for them (by name) again.  There was a point in my life that I thought I would always need a regular dose of anti-depressant, I’m not there any longer, I believe, because of the things above.

When SAD isn’t SAD – Sometimes SAD isn’t SAD, even though most of the time when it hits my depression is seasonal it hasn’t always been the case.  If you think that you have SAD and you are not starting to feel more motivated, having more energy, having more joy of life by March/Spring then maybe it is not SAD.  The longer days, the sunshine, the warmer weather, the snowdrops & daffodils should start to make a difference when they come, if not, it may be that you are not dealing with SAD this time.

Relax, laugh, flourish

Pam x

Good News Video

Facebook Video

So, incase you are not on FB and I know not everyone is, here is the video I posted when I'd heard my good news.  I'm flabbergasted as to date it has had over 3k views!  I'm a bit overwhelmed to say the least!

As an introvert (I usually describe myself as a gregarious introvert) I'm not used to sharing quite so much as I have on this journey, but am pleased that I opened up on this one as the support I have received has been phenomenal.  But as an introvert it's also why I post and then hide for a bit, til I can cope with it all again, I need to go 'inside' to restore my energy.  I will get round to answering the messages that have been sent, please be patient with me.  They are all read.and all very much appreciated.  From the likes and loves on the post, to the shares and the comments, and the messenger messages, the texts, the emails and the letters and cards.  What can I say but Thank You xx

I just wanted to post today to say that it is not the end of my journey (I still have chemo to go, I will always have Lymphoma); it is not the end of this blog.  There are so many half written posts in the draft box ... One about friends (the importance of them), one about language (my biopsy - they talk about using a gun and then shooting me, just what you need with a cold metal thing on your breastbone!) , one about pelvic floors (OMG that one might never get shared but it is important - incontinence being the second most common reason for being put in care in later life, and if you've ever been in one of my yoga or YogaBellies classes you know I am a bit obsessed - this time it's personal!) one about talking about cancer (and there are just so many things in that one, and so many people who won't even mention the word).

They haven't all made the blog yet because it's tough to write when your emotions are addled! And my concentration is pants at the moment, I flit from one thing to another and don't get finished.  But the encouragement I have had about the blog means a lot to me, and makes me want to write more.  It has given me a voice in a time when I felt like I've lost something of myself, it has given me a platform to shout that I'm not shutting down, I'm not quitting, I'm going to come back brighter than before, it has given me some sort of focus when ...

So when these squirrels have stopped raving for a bit, and I get my head a bit more organised, said blogs will appear.  I hope you will keep reading and sharing your thoughts with me.

Lots of love
Pam xx

PS Now I need to go and bake! MacMillan Coffee Morning Friday 30th at The AmiYoga Studio 10 -1.

Similarities ...

between the cancer/chemo journey and pregnancy/new motherhood!

Many of you know I work with lots of pregnant women and new mums in my YogaBellies work and I love it, I love being a little part of this very special time in women's lives I have had lots of conversations over the last few years with many different women (both in classes and in general conversations & trainings) and like to think I've built up a little bit of knowledge in this area!

So there was I, getting on with life, teaching Yoga, YogaBellies, Feel the Fear, running workshops, running retreats, sharing pregnancy stories and birthing stories, getting lots of baby cuddles, planning lots more of these things in running my business and then, as the 'F**k It's Lymphoma' title explains, I got Lymphoma, and life shifted, big time.  But there were echoes of those YogaBellies conversations in my current situation.

Let me explain...

(in no particular order)

Priorities change - enough said?!

Hair loss - common in pregnancy and after childbirth, and during chemo! And the stress of this for some people.

Medical appointments - more than you have ever had in your life before probably!  Tell me about it, I have 3 this week!  As well as being discussed as a medical condition... probably a future blog post!

Free prescriptions - the bonus of cancer and pregnancy! (Yes I am being ironic, yes I'm trying to look for a bright side)

Change in bodies - growing / then shrinking again, obvious in pregnancy. Common in cancer/ chemo/ drugs cycles...

Tiredness/Sleeplessness - Biggie - the tiredness of pregnancy followed by new babies not sleeping / feeding much of the time leads to extreme tiredness.  When people who are not mums talk about tiredness, new mums just laugh quietly to themselves (or not so quietly) and think, yes I wish I was your sort of tired!  Well cancer/chemo does a similar thing, there are some days my legs just won't work as they are too tired, it's weird, I literally go 'weak at the knees' and after chemo there is a bone tiredness that reminds me totally of that new mum time.  But I'm grateful ( though sometimes sad and a bit broody) as I don't have a new baby to look after, I can just stop and do nothing if that is what my body is demanding.

Being awake at 3/4 am is increasingly common for me, as is not getting to sleep, The drugs have buggered up my sleep patterns and my usual good sleep, 'sleep like the dead, including not hearing Allan snore like a trooper' is affected.  My usual remedies for times of not sleeping, including lavender, yoga, breathing techniques, milky drink, yoga nidra are helpful in keeping me relaxed but are not always working to knock me out as well as normal.  I know lots of mummies are awake during that time and it is comforting to know I'm not alone.  I often say hello in my mind.  Whilst lots of those mummies go online and chat on FB or shop during this time I steer away from anything electronic, (I dread to think what my book shopping bill might look like) as I know that makes my insomnia worse.

Mouth taste - chemo mouth is a thing! Lots of things taste weird - metallic -  during chemo, and it took me straight back to being pregnant.  I knew almost the minute I was pregnant with Luke (second child) as I tasted different, and it lasted the whole of the pregnancy (though for many it goes after first trimester).  I taste like that now and many foods taste very odd.  Sweet things help (not that I need any encouragement to eat more sweet things) as I can actually taste them.

Food restrictions - whilst I'm on with food.  There are lots of things in pregnancy that you are advised not to eat, and my list is pretty similar. No shellfish, no runny eggs, pate, various cheeses. In both cases, it's to do with risk of infection.  I don't have to avoid things that are considered 'might damage baby'!

Something growing inside of us!  But in pregnancy it's a much wanted baby! In my case it is a very unwanted growth...  Whichever it is though it takes energy from us! The feeling of our bodies not being entirely 'ours', for the time being, is I think, a similar feeling.

Waiting for results.  There is lots of waiting in this old cancer game, waiting to know what is going on, waiting for appointments, waiting to hear results, waiting for the 'all clear' (oh wouldn't that be lovely...) and there are lots of waiting times during pregnancy. Waiting to find out if this month is THE month, waiting for the result of a little line on a piece of plastic that might change your future,  perhaps waiting for 12 weeks to tell people, waiting for scans and then seeing what they say, hopefully all is good news, having various scares, and then again waiting to know that all is well.  Waiting for a bump to appear, waiting for baby to arrive! Waiting, that's the theme, you get it!  As is knowing that not all might go as well as you hoped, and I'm trying to stay upbeat and positive so won't explore this more today...

Baby brain/chemo brain.  Baby brain - a pregnancy-induced fog which includes forgetfulness.  Chemo brain/fog - a common term used after chemo to describe brain & memory problems.  Hugely similar brain state.  Neither of which are helped by the stress of the events causing it!  Hopefully both are temporary, because add this to menopausal memory problems I was already experiencing and I've no chance of ever holding an intelligent conversation again! Remind me who I am again!!

Friends - change!  Some step up to the mark and become closer & more important to you, others drift away because... many reasons I'm sure.  This is true now and of during pregnancy/new motherhood.  There is more to say about this in a future blog me thinks.

Life changing.  In the same way that life will never be the same again after becoming pregnant (a person's a person no matter how small - Dr Seuss), I know that life has indeed changed in a similar way.   There will in some ways always be life before and life after diagnosis, life before and life after chemo! (I'm definitely looking forward to the after of chemo!)  I'm still planning on living to 100 so for me this is my half-way marker.  A bloody great kick up the backside to make the next 50 count even more than the first 50!

This too will pass!  One of my mantras, whatever is happening, good, bad, painful, euphoric, knowing that it won't be forever is truly comforting.  I teach this in all of my classes, in YogaBellies particularly use it in relation to birthing :)   And I'm reminding myself of it daily.

You might not agree, or you might think of some more!  But these are some of the similarities that have hit me in the last few months.  Do let me know what you think!!

Pam xxx

Brave the Shave - my amazing husband! (with a little help from his friends)

With beard and hair.

Hair but no face fuzz!

And during (video clip of Al & colleagues - hope it works.. tech not my thing!)

 Finally - No hair and no beard!!!

And a fabulous £1500 + raised for Brave the Shave.  If you feel that you want to add to this amazing total then please follow the link and search for Allan Medhurst to donate.  

Allan's MKM Beverley colleagues who also shaved in support Lee Gale, Jamie Newman, Andy Beet, Lewis Palin and Marc Rowson,  Huge thanks to Katie Newman for the shaving expertise!   

And a massive Thank You to Claire, Gill, Pete, TJ, Paul, Rebecca, Sally, Susan, Emma, Lewis, Lee, Cheryl, Jessica, Gwyn & Jan, Phil, Kate Chris & Susannah, Jack, Matthew, Lynne, Daniel, Sarah, Tina, Marc & Amanda, Anne & Peter, Thomas, Fiona, Stephen, Susannah, Sheila, Kym & Nick, Sue, Hollie, Ali, Mum & Dad, Katie, Andy, Andy, John, Wayne, Diane, Catherine, Donna, Su, John, Pat, John, Gavin, Simon, Steve, Trevor, Andy, Paddy, Clayton, Kim, Steve, Martin, Jim, John, Bob, Marc, Darren, Peter, Mike and various anonymous donors for all your donations.

If I've missed you off I'm very sorry; if we've not said thank you in person it means we've not realised it's you (owing to knowing more people of the same name!) so feel free to remind me it was you so I can give you a massive hug.

A couple of weeks later I am now getting used to the short hair - as well really as he's decided it's staying short!  xxx

Chemo - halfway? Maybe baby!

Lots of people have asked 'What is chemo like?' so this blog post describes what chemo is like for me.  Everyone I've spoken to who has gone through this has had a different experience.  So don't assume that it's like this for someone you know who is going through it, or if you get told you need it at some point.

I've now done 3 rounds of chemo and according to my notes this may be half way! They states 6 - 8 rounds so I'm being hopeful for now.  I'll know soon as after round 4 I will be scanned again to see what is happening in my lungs.

A 'typical' chemo day.

Wake early! Get up, do PJ yoga, which is as it sounds, yoga in my PJs.   Currently doing Ana Forrest's 'Strength & Spirit' DVD and loving it (though doing humming bee breath in place of breath retention).  Have shower, shake out more loose hairs (and being grateful that I still have some), get dressed (in comfy clothes).  Go out and walk dog on the field, take off shoes, walk barefoot and 'ground' for a bit.

Get picked up by Mum or Dad (they are currently sharing the 'coming with me to chemo' duties), and get to the Queen's Centre at Castle Hill, Cottingham for an 8 or 8.30 am blood appointment.  I just need to say here how lucky we are here in Hull to have this Centre of Excellence on our door step.  This centre offers chemo and the next closest (I'm told) is Scarborough.  If you were to need Radiotherapy, the centre covers right up to Whitby, down to Lincolnshire and across to York.
Have blood taken.

After blood, take form to next waiting area, get weighed (they are obsessed with weight, I know lots of people lose weight with the treatment, or gain weight because of the steroids) I have no clue what I weigh and am not interested in the number so never ask.  If my clothes fit (living in my denim shorts currently) I'm fine, if they are tight I'll stop eating so much (cake), if they get loose I'll eat a bit more.

Wait a bit and see the Doc.  I'm under Dr Bailey in Haematology and he's great.  I usually get to see him, but when I see someone else that is also fine.  My lovely Cancer Nurse Specialist is Kay Beadle and she is usually in the appointments too, and available to chat if I need to talk more too. Discuss how I've been since the last treatment and any side effects.  Possibly change the drug ratio, or given additional prescription of more drugs.

Next it's through to the Chemo unit. This is a big and busy room, so many people needing this cannot be right! There are a few beds in here, for first timers and those who are really poorly and need to lay down, the rest of the room is full of comfy chairs which recline, should you choose, and are all facing out of the window to look over the East Yorkshire countryside towards Skidby Mill in the distance. There is lots of chat in here, the staff are all incredible, offering hugs alongside the treatment, always appreciated!

Have a cocktail of pills, including paracetamol, steroids, anti-sickness drugs and an antihistimine, I'm getting so blase at this I've probably forgotten what they all are.  And then you get 'plugged in'.  I usually need my hands soaking in a bowl full of warm water so that they can find my veins, (you know the old saying, 'cold hand- need thicker gloves...') so they can get the cannula in.  Others may have this in other places including in the arm or directly into the chest.  Once I'm plugged in then they pump in a variety of drugs.  My particular cocktail is R-CVP.  See here if you want to know more about this particular cocktail from the brilliant MacMillan page.  These cocktails are all made up on site on the day, so they are only made if my bloods are ok on the day, so nothing is wasted.  Get plugged in and then sit for a while, sometimes quite a long while.  It is possible to walk around, to go to the loo, to go outside onto the patio etc, just that you are attached to a pole on wheels wherever you go.

There are other treatments going on in this room too, for example some people will be having different parts of bloods pumped through them. Some will be in for just a short period of time, and others for longer.  Lots of checks are done during treatment, starting with 'obs' every 15 minutes (blood pressure/temperature/heart rate/oxygen level/pain level/state of consciousness), and then allowing a bit longer between as the treatment goes on.  Beeping is commonplace, with the chemo machines beeping when they are done, or if there is a problem. When I come home I still hear the beeping, just like when I worked in hotels (many moons ago) I used to hear the phones ringing when I got home at night!

If all goes well, the treatment finishes and they flush you out, finish you off, take out the cannula, collect a bag full of drugs for home and get to go home.  I've been really lucky and not had any major adverse reactions to the chemo, apart from a slight 'reaction' in my throat, in treatment one. Not all are so fortunate. Amongst the people I know who have been through treatment I've heard of many different reactions, including some needing hospital stays at the point of chemo or admissions from side effects.

My treatment cycle is a 21 day cycle, so I have treatment, and then 21 days later I come back for the next round. Again this is something that differs between people.  I know of some who need chemo daily. There are also different types of delivery including tablets.

Side effects...  The list of side-effects from chemo is long and varied and all will experience these differently.  For me again I've been really lucky in that I'm not having too many at this point.

Risk of infection - R-CVP reduces the number of white cells in the blood, making me more at risk of infection.  I have to be careful not to be around people who are ill, not spend time in close proximity of large crowds (where I wouldn't know if people were ill), not to go on public transport and generally be sensible in the choices I make.  For example I was going to go to Park Run at the Humber Bridge this weekend, but woke with a slight temperature and a sore throat, so made the sensible decision and went back to bed with a cuppa and read for an hour instead!

Hair loss - some, the hair on my head is A LOT thinner than usual, but after three treatments I've just booked in for a hair cut that I never expected to need.  My eyebrows are a little thinner, but as I said in the last post, I'm still having to pluck my chin!

Sickness - after the first treatment I was very sick, but only for the first day following chemo.  After session 2 they gave me better drugs so was much better, and by session 3 we'd nearly got it sorted so that I was only queasy and a little sick very early on the Saturday morning before I'd got more drugs inside me.  I don't plan anything for chemo weekend, and spend the Saturday morning either dozing in bed or watching Saturday Kitchen planning the things I'll cook once I feel like eating again.  As I fast for the day before chemo, the day of chemo and the morning afterwards, good tasty food becomes really important to break the fast.

Tiredness - Chemo makes you tired. Period.  There are various levels of tiredness.  When I asked one of my lovely friends about coping with chemo one of the things she said was that there would be days when I would be so tired I wouldn't even be able to lift a cup of tea.  Thankfully I have not experienced this yet, and hopefully I won't.  I have however, been exhausted after getting up and having a shower, and had to go back to bed for a couple of hours.  Walking the dog is mostly ok, though there are days when even a short walk exhausts me. And yet most days I can still walk the dog (often twice), do a yoga practice, and go out and about and see friends and potter a little at home.  For this I am very grateful.  Those days when this is not possible I'm getting through box sets (currently Big Bang Theory, House, Mad Men and more recommendations welcomed!) & lots of books.

And following on from that, sleeplessness - Steroids keep you awake!!  I know this is not news to many people, but having never had them before I wasn't quite prepared for this.  After my first treatment I was awake for 3 days solidly and was hallucinating!  Thankfully I then slept (I was snoring when Al came up to bed that night, so he was happy for me, maybe not so much for him though!)  After that first treatment I asked for and was given sleeping pills to counteract this.  For someone like me who rarely takes tablets of any sort, choosing to take extra drugs is something I did not think I would do, but have decided that I have to give my body the best chance and I know that sleep is an important part of healing.  

Bad Mouth Taste - Chemo tastes horrible!  Or at least it does for me.  I've been told that pineapple helps to remove this, though I can't eat pineapple - sets my non-existent gall-bladder off!  Werther's Originals work though, so I always have some to hand.  This taste comes and goes over the 3 weeks, and seems to be worse when I feel worse.  Cleaning my teeth helps though you can only do this so many times a day & night (I have got up and cleaned them in the middle of the night as I taste so horrible)! A sore mouth is also a side effect, and a baby toothbrush is recommended so that you are gentle with this.

Constipation is something that apparently is very common but I'm pleased not to have struggled with, and I'm sure that's thanks to yoga.  The advice is that you have to contact the hospital if you don't have a bowel movement in 48 hours!!  That said my gut bacteria is altered by the drugs.  But that is probably TMI!

Numbness or tingling in hands and feet, peripheral neuropathy.  This is wierd.  My fingers have lost feeling at the ends, and my right foot has got quite a lot of numbness. I also have odd pains in the foot and up my hands from this.  I'm trying to keep the nerves working as much as possible my learning new intricate skills with my hands, I'm braiding Claire's hair, learning new braids (thanks Claire & YouTube) and learning to crochet (thanks Sheila).  I also do regular yoga nidras and send the awareness to my finger tips and into my feet.

Nail changes - they are now crap! Have all broken off, and continue to break off,

Other side effects I'm not experiencing,thankfully and the ones I am experiencing are all manageable.  Obviously I'd rather not be having chemo but, for now, it's not quite as bad as I expected when I was first told I needed it. I hope that I'm only going to need 6 cycles, and if so I am half way there, but if it has to be 8 then it has to be.  Either way, I know I'll be done before Christmas, and that will be the best Christmas present ever!